Sleeping with the enemy

Sleeping with the enemy

Those of you who read my posts in this forum will know I recently after a decade got my sleep back. It is cause for great celebration 😄

But as always with this illness you are faced with never ending compromise. Getting into bed is ok getting out is somewhat of a challenge but worse is the inability to move, or turn over. It's like a nighttime paralysis. And I don't like it.

I'm trying all the tricks slow release meds and silky pyjamas but I haven't fixed it.

If you lie in one position for too long you end up with chronic back ache or neck ache on top of the normal rigidity pain.

But far worse is the sheer 'want' to move and total inability. It's like an internal claustrophobia.

Since this is a fairly new status for me I am still trying to work out how to handle it more effectively from a mental health perspective.

I'm also balancing some new limitations as unless you have friends who are happy to shove you in the night like Philip now does, solo sleepovers are a thing of the past.

I have the sense that 2016 is the tip of my PD iceberg. I've had it good for a lot of years and I've learnt a lot.

In all things there is a mix of adversity, success, challenge, growth and adaptation. I intend to be smart about it happiness and joy is a state of mind not of body.

CHH

[jillfd]

I'm Just now trying to relax and get back to sleep after a 3 hour awake break. It's almost 4 am here. There are definitely trade offs to the sleep - awake cycles.

I really should stay in bed if I wake up and stay awake in the middle of the night. Puttering around the house seems great at the time but it always catches up. I just spent two hours sorting stones to make earrings. Should have put my headphones on and listened to music in bed . But the body felt better moving and I will pay later as always. Occasionally I'll have a true refreshing nights sleep and i truly appreciate that when it occurs .

[Donzim]

10mg time release melatonin works for us. Doesn't keep him from waking up but does make him want to go back to bed after the bathroom break instead of wandering. We have both found it is easier to get up if we turn on the bed vibrator and raise the head of the bed somewhat. That means of course that one must have that kind of bed.

[Hidden]

I too was Dx in 2005 and my PD has not progressed as fast as yours. With meds and exercise you can not tell i have PD. I think i am better today than in 2005. I mention this only to show how PD effects different people.

I am 62 and feel like i am 40.

Keep fighting and looking for what works for you.

Good luck.

[Court]

Hi Colleen

I can totally relate to your problems in bed (sorry meant this in a nice way). I tend to sleep for a couple of hours then wake. I was given some aids for picking up from the floor' a shoe horn, a block of wood with a handle to help me get out of bed, I find this difficult to use. Nothing helps. So up I get and sometimes, not often I go back to sleep.

I do miss my sleep. I often get up feeling more tired than when I went to bed.

However, I am determined to live life to the full. I fight Parkinsons for pole position on a daily basis. I am not saying I will win, but I will give him a run for his money.

Sue

[Hidden in reply to Court]

Damn Right you do!

[HeartSong]

Henderson-Heywood, I like your spirit! I'm having the same problem. I don't turn over in my sleep, which my neuro said was a PD thing. If I sleep a long time in one position, I wake up with terrible aches and pains. Silky pajamas haven't helped. Last summer I was using topical magnesium rub which helped but I got tired of the film that it left on my skin. So, here's my current routine to avoid the pain, although it's not perfect. I try to take my last dose of levodopa about 30 minutes before going to bed. I set an alarm for 4 1/2 hours after that. When the alarm goes off, I get up, take another dose of levodopa, and, 30 minutes after that, go back to bed. I'm careful to not turn on any bright lights, TV, or even read when I'm waiting for this last dose of levodopa to take effect because that would keep me from going back to sleep. I usually just sit in a chair with a very low light and gently massage my face or any tight muscles. When I go back to bed, I set the alarm again for 4 1/2 hours. Also, each time I set the alarm for 4 1/2 hours, I set a small timer for 2 hours. It sounds only for about 5 seconds. I'm trying to train myself to turn over but not become fully awake when the timer sounds. I've had only moderate success with the timer. This all sounds very convoluted, but the pain and back aches I used to wake up with were really wearing me down.

If you find anything that helps you, please shout it from the roof tops!

As a side note, the alarm clock that I set every 4 1/2 hours is not one of those usual, irritating things that you want to throw against the wall. It's very gentle but surprisingly effective at getting me up. It's called a Zen Alarm Clock made by a company called Now & Zen. (now-zen.com/). It has one exquisitely tuned metal bar that is struck by a hard rubber ball (much like a xylophone). There is about a 5 minute lapse between the first and second strikes so you wake up slowly. Then after that, each strike comes a little sooner until finally it's sounding constantly - but always gently and with a beautiful tone. It's expensive - around $100 - but oh so worth it. I bought mine about 20 years ago, and it's still working fine. I think I read that it's made by a community of monks, but I'm not certain of that.

[Hidden in reply to HeartSong]

If I find anything rooftops it is!

[llwwd]

Hi CHH, how did you get your sleep back?

Thanks, llwwd. I've lost mine & can't seem to find it.

[Hidden in reply to llwwd]

I thought my chronic insomnia was due to pd but it turns out it was an agonist I used to take that was causing it. This may or may not be the case for other people so I must be responsible and add my caution here. However I am very concerned about this category of drug, even though they work really well, my experience has been a bad one. All sorts of positive things have happened since I stopped. But equally my movement has been impacted. You gain you lose! Typical 😃

[llwwd]

Thanks, I understand. Have you ever considered DBS? I know it's not for everyone either, but I had it 5 months ago & I am very happy with it. I am still getting used to it. It's like you say You gain you lose. It always seems to be a tradeoff. Thanks for all of your answers I always look for your advice, comments or just chit chat.

LLWWD

[Hidden in reply to llwwd]

That's very generous of you to say. No DBS is not on my horizon but so pleased it's working for you. Much admiration.